#'sickly'scribe

[sicklyscribe]

More classic sickly musings

I had a therapist once who, after a few months, revealed that he had intentionally presented himself as detached and neutral no matter what emotions I was processing. Whether or not you ascribe to the psychology of ‘personality disorders’ (my current therapist is more of the philosophy that those labels generally do more harm than good, and I see merit in that) this former therapist suspected for a long time that I had Dependent Personality Disorder, and wanted to minimize chances that our sessions would reinforce dependent behavior and prevent me from being able to leave therapy/switch therapists in the future. 

Regardless of the repercussions/philosophy/broader implications of the methodology, it really worked for me at the time, because my need for determining my feelings independent of anyone else’s feelings was at Emergency Levels. It was frustrating, and definitely made me question the ways I present myself to people depending on what kinds of sympathy or understanding I want to receive from them. 

All of this is to say that I have very little experience with processing events internally, and knowing how I feel out of the context of how other people feel. I’m a broken record, blah blah blah, this tag is full of me saying this, it’s because of doctors. The amount of times I’ve said the same thing on the same subject is part of this endless void of validation little child-Amy is trying to fill, and it’s a brutal Catch-22 when sharing ones’ feelings in a healthy way is in and of itself fraught with dangerous pitfalls begging me to pin my self-worth in others’ eyes in a very unhealthy way. 

I never, ever, ever consider what I want to say. That just seems pointless to me. I always consider what I want my audience to hear, and how, and when. A few years ago, I wouldn’t have been able to conceive of the former without some sort of association with the latter. So it’s no surprise, really, that I have so much trouble identifying and caring about my own feelings. And it’s no surprise that I’ve become a pretty effective communicator along the way? 

And it’s no surprise that I’ve been able to convince myself that I’m not disabled, since other people don’t think that I should be disabled? 

The pain is. Bad. I’m thinking about how to describe it in those old familiar ruts in my brain that were carved from thinking so hard about how to describe it. I used to be good at ignoring it. Then I got a diagnosis that made sense. Then it tripped me and ruined my ankle and left me with a double-isolation of pandemic social distancing and no-weight-bearing, no-driving, move-back-in-with-parents infirmity. Before my last surgery, I couldn’t sleep due to the twin of anxiety and extreme chronic pain. I was resigned to it, accepted it, made myself shut down and do what was expected and show up for the operation. 

I was scheduled to have more surgery yesterday morning, and I had a repeat of that night-before, except I was so angry. I was so furious and ill and achey and I wanted to tear something apart. The less accepting I am of this pain, the more I realize just how bad it has always been, and it’s like Godzilla is getting bigger and bigger before my eyes. I’m furious. And I’m stalled on treatments because I rescheduled surgery and that might not even be my last one. 

Of course I can’t fucking focus on doing a job or writing my books or having fun with friends. I have been in agony for decades and ignoring it because I could ‘technically’ still do what everyone else did, with enough sacrifice. It’s bad. It’s really bad, and yes there’s a part of me that always types things in order for other people to read it and ‘see’ me and pat that little child-Amy on the head, but I think it’s worth it right now to risk that spiral and talk to myself out loud and say you need to ‘see’ this pain. you need to see how it’s affecting you, and stop blaming yourself for being and doing less than your aspirations. Ignoring it hasn’t allowed you to do the things you need or want to do. You need to try something else, even if it means watching Godzilla morph and mutate and grow before your eyes while you’re in post-trauma standstill. 

You need to get angry about it. Not angry at doctors, or yourself. Be angry at the thing that hurts you most. It’s okay. Ignoring it. Hasn’t. Worked.

[sicklyscribe]

HEY guys guess what? I woke up this morning and didn’t feel like ~death frozen over~  Last time I was on a med that helped me this much it ~stopped helping two months later when I started my job~ so here’s hoping that this one ~~~~isn’t gonna play me like that~~~~

[sicklyscribe]

pain doc was finally seen and my anxiety before during and after is about as low as it could have been (which is, to say, moderate to severe) few months ago my GP did NOT want to try low dose naltrexone at all, but I think maybe she had assumed I meant ‘low’ for what it’s usually used for (addiction) and not ‘low’ as in the teeny weeny amount used in pain treatment which is a fraction of the typical addiction scrip Pain doc’s first rec was the LDN since effective for a good chunk of people for a good chunk of overall relief, and it doesn’t have side effects/interference with the other Shit i’m on

It did seem like the best option when I was researching on my own, and so I’m glad to try it, but. exhausted. with the. carnival of it all. 

[sicklyscribe]

sent an appointment request to a nearby pain clinic a week ago and they. uh. actually got back to me and were able to fit me in TOMORROW which I was not expecting and not totally wanting because I’d thought it’d take forever to get in and I’d have months to acclimate myself to the idea of Another Doctor but

TOMORROW

i already did my paperwork so i’m gonna spend 45 minutes in the waiting room working on late session notes? i guess?? or just stewing in paranoia?? Then after the appt I’ll have a little break before needing to go to work???

It’ll be fine! It might be awesome! but I don’t think I’ll sleep well tonight and I have a VERY FULL WORK SCHEDULE NEXT WEEK and my LEGS HURT REAL BAD, JIM

[sicklyscribe]

The more chronic diagnoses I get, the more urgently I feel the need to get a job that can support my own treatment and insurance. but of course, the more chronic diagnoses I get, the more Im forced to process the realities (new or ignored) of being sick, and how much I am limited or should limit myself. 

I don’t know how to explain it. The pressure feels inescapable, even though I know my parents are in a position to support me and they are happy to do so. They know how badly I want to be independent. 

I don’t know how much to blame this on my brain issues but I can’t wake up and *in bed* do ten minutes of stretches. I can’t eat consistently or in a way that’s anywhere close to a diet recommended for my conditions. The pressure is on to improve myself however I can, but there’s an opposite pressure that just. SCATTERS it all. A gale of cat-5 air that switches on whenever I try to focus on things. priorities scatter. goals atomize and identity just. dissolves and it all makes a haze in my brain that is cold and tough to breathe. I float there and I lose. 

I’m so fucking envious of girls who can go to parties in cute shoes and stand for half an hour chatting. of people who don’t have to commit pain and strategy to the time spent in the fucking bathroom. my friends/family who can play with my nieces for longer than I can before I feel like i’ve been hit by a truck. twenty-somethings who sleep at night without a breathing machine to keep their airways from collapsing, because I’m getting one in the next few weeks! 

I’m envious of my twelve year old self who could come home after school and write pages and pages of fiction with a fire and self-confidence that could take on armies. 

I can’t cry about these things unless I feel ‘seen’, can’t really face them or deal with them. And I feel so bone-rattlingly uncomfortable about all of my illnesses -- all of them -- being invisible. Any kind of pain or process, I feel like if it’s not seen by others then it’s not something I can justify caring about.  I know where that mentality came from, I know it’s doing me so much harm every day, but I can’t let go of it. It makes me feel like a performance, constantly, and it has not been possible in years for me to see myself from my own perspective instead of an imagined or referenced other. And when everything feels like a performance, even thoughts and feelings you don’t ever share, it becomes so easy to convince yourself that you’re just being Sensitive and Dramatic and Overreacting and Inconvenient. So easy to convince myself that I’m still a six-year-old crybaby who can’t tell the difference between a mountain and a molehill. 

[sicklyscribe]

I was too exhausted and pain-filled to play with my cat when I got home today, and my phone died so I slept through his dinnertime, but he’s been cuddling with me tonight and showing me love and I don’t deserve him 

[sicklyscribe]

Big Ouch

[sicklyscribe]

hey all you beautiful dorks who click my whine posts, I actually have a good one for you today. 

There are some nice things happening/nice things that might happen in my life currently. One of them is my new possibly-probably?-temporary ADHD med. I’ve never been diagnosed with ADHD, but I’m experiencing similar symptoms likely due to pain/lack of good sleep. I really feel like I’ll actually be able to make it to my sleep study appointment, and, dare I say it, be productive in the meantime. 

Sappier post on my instagram (follow if you like, if you’re a mutual with a different username feel free to ping me and let me know it’s you)

[sicklyscribe]

b’deeb’deeb’dee that’s chronic, folks

So my mood has been *so much lower* ever since I got my new diagnosis. Like, there has been a lot of relief and a lot of curiosity about it, especially a release of stress knowing I’m not doing anything to hurt myself more over time, but overall just. Like. Realizing that I hadn’t just been ignoring pain in my legs that I knew was there, but absolutely in denial about pain on the upper half of my body too. Bad posture/no exercise was what I would tell myself every time I noticed it but I was/am in a position where I ignored my nervous system entirely? and it worked out pretty well? Even though logically it made no sense for my legs to hurt so badly from flat feet and my arms/neck/back to hurt so badly from bad posture, I just held onto the tiny justification and was able to send those pain-nerve-signals to the soundproof room in my brain. 

When the doc gave me the official talk about fibro she was like ‘Sometimes it really is effective to just find ways to ignore it’ and I was like wow. great. um. that was a lot easier to do when I didn’t know what it was. Now I can’t go back to that!!! Ever!!!!!!!

RIP coping mechanisms!!!!!!!!!!!! This bitch is in every nerve and it’s in my fuckin’ brain too, nothing is safe!!! 

[sicklyscribe]

needle doctor man: don't do anything too crazy this week, okay?

me, not planning on it, also not sure what that means: ok!

me today, sobbing because I had to kill a cockroach: ....... ......needle?

[sicklyscribe]

diagnosis discussed!

‘chronic pain’ was a super hard label for me to accept recently because I can force myself to do pretty much anything and ignore the results? But since it is all the time and it is pain I’ve started to claim it without feeling like an imposter. Now I’m looking through tags for fibro and seeing the word ‘disability’ a lot and feeling SUPER WAY MORE uncomfortable

I don’t feel like I can claim that label? “(of a person) having a physical or mental condition that limits movements, senses, or activities.”

Whenever I can’t do something because it hurts, I always frame it as ‘I’m not able to handle this mentally’ not ‘my body is limiting me’ because the only physical symptoms are pain and fatigue, not true mechanical muscle/skeleton interference. I don’t feel like I can include myself in the same label as someone whose physical body is dis-abling them from something they tell it to do. 

And apparently a bunch of people who have my diagnosis do use that label? So I feel super imposter-y and unsure of everything and it just feels really suffocating. I know it’s a condition with hugely different presentations/symptoms but yikes yikes yikes

my body telling me to stop doing something hardly ever matters? like, if I can think past the pain and the feeling of weakness then I can do it. So I just do it most of the time regardless of the consequences

[sicklyscribe]

-deflates- 

feels bad, jim. Most of my symptoms are well-controlled on my current medicine but wow. The debilitatingly painful disease that made eating and being at school when I was a teen extra stressful is a fun quip. hilarious. it costs you absolutely nothing to make and yet it can compound feelings of self-loathing and isolation in people who live with the diagnosis! what a bargain! and you can keep going, too, there are tons of incurable conditions that are just extremely clever to joke about online, in tv, in person -- anywhere!!!!!! amazing!!!!!!!!!!!!

[sicklyscribe]

blablablablablogging 

really hoping all the walking I did the past few days is not going to bite me tomorrow!! ! I did well tutoring today without any addition of acetaminophen but the rest of the day has been reeeeeal foggy and my back has been whining

seriously i did a ton of walking this week compared to... every other week of my adult life

[sicklyscribe]

SAD ASS TIMES AT SICKLYSCRIBE DOT TUMBLR DOT COM

how’s a girl gonna get a second part time job or a full time job that actually pays bills during the summer when I can barely handle what I do now and not very well at that

m’legs be hurting pretty bad tonight and m’brain is very frustrated 

[sicklyscribe]

Ever since I stopped exercising regularly my legs have started to get tight again, tighter than they’ve been in years and years, and honestly it’s disturbing. I can’t keep exercising because I am not forced to for school credit, my brain just is not capable of that kind of self-care right now. I thought I’d go back to the pain levels I had before, not nosedive. Not this.

I’m in a lot of pain. I’m in so much pain. And every time I try to think about how to describe it I see myself at different young ages, spending free time or staying up at night trying to figure out how to find the right words or phrases or metaphors to make doctors understand that I needed help. And that’s its own kind of pain.

[sicklyscribe]

rlly anxiety-inducing situation, really tough therapy session (as always) and I come home to get frozen custard and play a stupid game with a bunch of friends

The last thing I thought tonight would consist of would have been hours of straight laughter.

It’s a really nice bit of perspective after diving down deep in the muck of all the poison I’ve been cultivating in myself for such a long time.

I used to think that my legs were just a little part of my existence. Constant pain, some issues with prolonged mobility... just a part of my physical life that I’ve gotten used to. I never would have guessed that they affected how I interact with every single person in my life. How I think about any kind of pain and how I decide to deal with it.

I have a really hard, awkward conversation tomorrow, asking for help in a class because of depression symptoms. And the feeling I get when I’m about to ask for help, when I know I need to rely on someone to do something for me, and I have to ask them for it... it feels like walking into a new doctor’s office with my mom, trying to find the adjectives and metaphors to describe pain so that a doctor will believe me. Not just know I’m telling the truth, but know how badly I need help. Because I knew I needed help. My mom knew I needed help. But neither me nor her could get that help on our own. I needed someone who knew how to help me, and I needed them to believe me, so that they actually would.

Every time I felt like if I just described it differently, or acted more or less desperate, or had this or that tone of voice, maybe this time they wouldn’t speak to me like all they wanted in the world was to roll their eyes and scoff, begrudgingly knowing they had to say something doctorly to appease my worried mother. Maybe this time I wouldn’t be the hypochondriac brat with the fussy gullible parent. Maybe if I said it this way. Maybe if I described it this way. Maybe they’ll believe me. Maybe they’ll help me.

I felt like there was something I could do to make them see. I didn’t think I was doing anything wrong, but I felt like I could be doing something better. If I could truly communicate what I felt, then they would believe me. I couldn’t control what they thought, not directly, but I could control what I said and did... to try and get what I needed from them.

And that’s how I learned how to talk to people. How I learned that if you can’t get what you need indirectly, by planting seeds for people to decide to help of their own volition, then it’s too much to expect to get it if you come right out and say it. I couldn’t show people my physical leg pain. So I had to go to doctors and describe it, and it absolutely destroyed my trust in myself. In the way I presented myself to others. Truth wasn’t good enough. Truth was real and good, yes, but God, telling the truth wasn’t getting anyone to believe me. It wasn’t getting anyone to help me.

So I have to go to a very strict and serious (but, to be fair, also very very kind) professor tomorrow and ask her to help me. And it feels like I’m going to the doctor. It feels like honesty is not going to be enough. It feels like asking outright is outrageous and selfishly entitled. I’m embarrassed by my mental state, but I’m even more embarrassed to go to someone and talk about it with the expectation that they’re going to help me. With therapists, with family, with the on-campus accommodations office, it’s different, it’s their job to understand. With professors, it’s their job to teach me and grade me, and all of my emotional progress this year is great but it means jack shit to this assignment that’s two and a half weeks late. I’m doing tons of work to try and be a good student, but the student-work itself still isn’t getting done. And it’s the latter that matters when it comes to graduation.

It’s not my fault that they didn’t believe me. But when I feel like I could have done things differently, if I could have done anything that would have caused them to help me... I feel like it’s my responsibility to find that way. Every time, every relationship, every conversation. From the doctor’s office to friends to Ben to professors to strangers I speak to for ten seconds. I feel like it’s my responsibility to find the set of actions that will get me what I need from that person, so that I don’t have to ask for it. So that I don’t have to trust them with an honest truth and see them doubt me or judge me or ignore me.

The pain in my legs has changed over the years, but this feeling hasn’t. They’re both constant though. And both of them could have been avoided, maybe, if the first or second or third or fourth doctor looked at me and decided to believe that I was actually in pain.

To be fair, my pediatrician did believe me, but she didn’t know what to look for. The real weight of all of this goes on the specialists my mom looked up, or was referred to, or trusted with her own health issues. Who shrugged their shoulders and said ‘Growing pains, perfectly normal, sorry kid’ while I heard ‘it’s going to keep hurting, and I won’t do anything to help you’.